For trusted information on the pandemic, visit the American Academy of Neurology’s Brain&Life COVID-19 (Coronavirus) and Neurologic Disease Resource Center and the US National Institute of Neurological Disorders and Stroke COVID-19 information page. Find National Institutes of Health resources here.
Having neuropathy does not appear to increase your risk for catching COVID-19 or feeling worse.
Some important points to keep in mind:
1. Patients using corticosteroids or other immunosuppressants have generally higher risk for infection, and for more serious illness. It's important to get fully vaccinated and boosted, and to contact a healthcare provider rapidly for new fever, upper respiratory infection, or difficulty breathing. Published evidence shows that a 4th vaccination strongly protects against infection and illness when given at least 4th months after the 3rd immunization.
2. Patients with neuropathy-related postural orthostatic tachycardia syndrome (POTS), low blood pressure, tachycardia, or dizziness on standing risk fainting if they become dehydrated. Neuropathy patients with these symptoms who become unable to eat and drink for more than one day for any reason should ask a doctor if they might need intravenous rehydration.
Long-haul COVID refers to persistent symptoms some people experience for months after their initial infection. Read more in this article from The New York Times Sunday Magazine. Dr. Oaklander is quoted.
In the first episode of the NeuropathyCommons Podcasts, your host Dr. Alex Chamessian chats with Dr. Anne Louise Oaklander, a leading expert on peripheral neuropathy and founder of NeuropathyCommons.org. Learn about this website for patients, and listen to their discussion about neuropathy in the time of a pandemic. What do neuropathy patients need to know about the nerve disease and COVID-19?
A Small-Fiber Polyneuropathy Patient Shares Her COVID-19 Experience
I have small-fiber polyneuropathy and am a patient of Dr. Oaklander. I am in my twenties and was on high dose steroids for more than a year, but am currently not on any immunosuppressants.
I had COVID-19. The threat of getting a sickness about which so little is known, when I already have a rare neurologic disease, felt very scary. I want to talk about my experience, and also share some practical things I did while I was sick that helped me feel better. I also want to emphasize that while this sickness was scary to have, I am okay!
What it felt like
Three weeks ago, I started showing signs of COVID-19. It began as a sore throat. I had a runny nose, so I did not think much about it. The next day I suddenly lost my sense of taste and smell. Everything tasted dull or kind of sour. The following morning, I woke up with a mild fever. I started to quarantine in my bedroom. As the days progressed, my fever persisted, and I began to have intense body aches.
After four or five days of symptoms, my sore throat felt like it was sinking down into my chest. I started to cough, a very dry cough. It hurt intensely each time I coughed.
With the cough came a strange chest tightness. My ribs ached. My lungs felt tight and raspy. I could not take a full deep breath in. The entire time I was actually getting enough air, and had good oxygen levels in my blood, but it felt as though my lungs could not take the air in, almost as if I were drowning. I have never before experienced such a sensation.
Days six and seven were the days I felt scared, but then I started to feel better. My fever and the worst of the pain in my lungs went away. The chest tightness and cough slowly started to improve after that. I am now basically back to full health, although some aches continue, and my lungs hurt if I walk for too long outside.
Throughout my sickness, I was definitely worried that my small-fiber polyneuropathy would flare. But so far, I have not experienced any neurological symptoms.
1. I was quarantined for 10 days in my room. There are two bathrooms in my house, so I was able to have my own bathroom. My roommates brought me meals. One of my roommates would wash all the dishes with gloves on at the end of the day. These precautions felt extreme, but none of my roommates got sick.
2. I drank a ridiculous amount of water and tea throughout the sickness. I got myself an electric tea kettle to keep in my room, so that I could make myself tea anytime. I also kept snacks in my room so that whenever I felt hungry, I could eat. I made sure that, even though my sense of taste and appetite was off, I was still eating enough.
3. When my chest would hurt a lot, I would rub my chest and neck with Vicks® VapoRub™ and then use a heating pad. I would then take slow gentle breaths. This helped a lot!
4. I had a few people I would FaceTime with regularly during the days. This was important. Even when my lungs felt very painful and short of breath, I was still able to carry on a conversation. This helped me know I was getting enough oxygen. Also, having people around, even virtually, made me feel less isolated.